current problem - centrals and mouthbreathing

[golilol]

EDIT: initial post was tilted diagnosing UARS and related questions. I ended up buying a machine and I keep the same thread to ask questions.

Hello,

New here. I suspect I have UARS as I have many risk factors (very small chin/bad overbite, my dad had OSA, mood swings, got 2 molaries extracted, wore an orthodontic headgear for bringing the upper jaw backward, permanent stuffy nose, cold hands, anxiety).

Just came back from the ENT doctor with a prescription for a polysomnography and I have questions:

Question 1: Some doctors are still debating the existence of UARS, or it being distinct from OSA (see for example https://www.researchgate.net/publicatio ... t_Syndrome) and at the same time many researchers ignore the measures of "RERAs" or arousals that are not apneas (for example see https://pdfs.semanticscholar.org/7d70/c ... cba186.pdf). It's been hard to get a prescription for polysomnography because I'm not the typical obese +50 yo man. All this makes me scared that I could go through a polysomnography without UARS being diagnosed even though I have it. Do you have any advice? Should I ask for hospitals if they have specific equipment before booking an appointment? Do you think EEGs are sufficient for diagnosis? I read that the gold standard is Pes but esophageal manometry does not seem to be used here in Quebec (Am I wrong?), or might be so invasive that it could disrupt sleep completely. Could somebody point out an article that explains clearly the relation between EEG arousals and Pes "reversals"? Do people get diagnosed with UARS outside of the Stanford lab where it was initially found, or mostly people with mild OSA that can't get rid of the symptoms despite low AHI self-diagnose with UARS?

Question 2: I don't know how long it will take before I take the polysomnography test. I will call tomorrow and know very soon. But there seems to be a (good?) chance that I might not be diagnosed with UARS because gathering evidence is hard or because it is not well-known (see question 1). So I was wondering if that sounds like a good bet to buy a BiPAP machine. I am a bit afraid to do it firstly, not to waste money in case I don't have UARS, secondly, because I had a pneumothorax, treated with abrasion years ago, that sometimes makes a comeback. And thirdly, since xPAP are not reimbursed in Quebec anyways, if I'm diagnosed, I'd have to buy it myself anyways.

Question 3: I'm currently trying MAD. Soon will try TSD. For people with UARS, do you think I should notice differences when they're used alone? Or is it mostly useful in conjunction with xPAP?

More than 3 questions actually! Sorry. Thanks for the information, have a good day,

[werther]

Hey, welcome to the forum!

You didn't tell: do you snore? how is your sleep quality?

Yes, "...by clinical criteria of ICSD3, UARS has been "absorbed" into OSA." (https://www.sciencedirect.com/science/a ... via%3Dihub) and "There are still several issues that need to be better defined and established regarding UARS, however, most authors today agree that sleep breathing disorders cannot be limited just to OSAS criteria." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4608900/)

I understand that you want an “official" diagnosis. I felt (and still feel) the same. A year ago I phoned with R Stoohs, author of one of the above papers, who has a sleep lab in Essen, Germany, and asked him if I could visit him (six hours by train, that's why he offered me to talk over phone first). He told me that I could give CPAP a try without seeing him.
I know off a few sleep labs in Germany that recognize UARS, and a few in the US, it's not just Stanford.

I think it's a good bet. That's what I did, and I think my sleep quality is improving. Don't know if a pneumothorax is a contraindication, maybe one of the experts can tell you or you can ask a pulmonologist.

[golilol]

You didn't tell: do you snore? how is your sleep quality?

My sleep quality is bad. I never feel refreshed. I sleep more than everybody and am still tired.

I've used sleep as android a couple of nights. On a few nights, I have had very small snoring episodes that woke me up. But I don't snore consistently.

I understand that you want an “official" diagnosis. I felt (and still feel) the same. A year ago I phoned with R Stoohs, author of one of the above papers, who has a sleep lab in Essen, Germany, and asked him if I could visit him (six hours by train, that's why he offered me to talk over phone first). He told me that I could give CPAP a try without seeing him.
I know off a few sleep labs in Germany that recognize UARS, and a few in the US, it's not just Stanford.

I think it's a good bet. That's what I did, and I think my sleep quality is improving. Don't know if a pneumothorax is a contraindication, maybe one of the experts can tell you or you can ask a pulmonologist.

So in the end, you are still not diagnosed?

Are you not sure that sleep quality improved?

[dogsarelife]

this may be of benefit to you (bolded part especially):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4688581/

Guilleminault et al. also conducted a study involving OSA split into a hypopnea and apnea-hypopnea subgroup, UARS patients and an asymptomatic normal breathing control group matched for age and body-mass-index. The study compared the nocturnal sleep EEG after treatment using FFT to dissociate the different EEG band activity using a 4 min over-lapping time-window [40]. All SDB groups had a significantly different sleep EEG than controls, but the UARS patients were also significantly different than both OSA patients groups: There was a significant increase in both delta and alpha bandwidth powers in UARS compared to OSA, and a much higher alpha power with less delta power than controls. The conclusion of the authors was that the UARS patient demonstrated less sleep disturbance when considering the bands other than alpha, but had a much more “alert type” of EEG during the total sleep time with much higher alpha relative power leading to a maintenance of air exchange at the cost of continuous near-awakening.

Do I expect your sleep tech to pick up on that? Maybe. My sleep tech had 30 years of experience and did not know to note I had a more "alert type" of EEG and I don't think an ENT would be able to note that either.

I had a pressure esophageal manometry measurement and I found it very important to have; it did not disturb my sleep though it can change how some people sleep, and that happened to a friend.

Oh - and I had some alpha-delta intrusions on my EEG during my study without PES (you can click on my name and see my study results) but my ENT was not aware of UARS and how to treat it versus OSA. Only a sleep doctor (who had done post residency work at stanford) was willing to listen to me and accept that despite low AHI I could feel like crap. I would really try to push for PES measurement because doctors accept what can be measured.

Of course, you can try to find the pressure you need on your own - many people on this board do, but it was hard in my opinion because I was so brain-fogged and anxious from lack of decent sleep due to UARS, and for a long time it seemed hopeless that pressure increases could help, especially at the rate I was going. On my own I got up to 12 cm H2O, and my ent doc initially had me at 4-15, and my pressure was never going up from 4! However, I didn't trust the 12 cm H2O - so then I asked a sleep doc for a study and got the PES which suggested 14 cm H2O using pressure esophageal manometry measurement and I'm actually up to 18 IPAP, 14 EPAP right now and feel that I could go higher and be more comfortable, but am limited by aeorophagia.

I believe Pugsy said that's typical of people with UARS - they need a lot more pressure than you might think and have to use a lot more subjective evaluation of how they feel.

2. I don't know? I personally was helped a lot by bilevel, but that doesn't mean you will be. Does your insurance let you rent machines to try them out?

3. I'm sorry, I don't know what TSD is. I don't like oral devices personally either but of course, you may find that suits you better, or you may want to use MAD in conjunction with xpap would be my guess.

good luck! hope that helps.